But before I get to that, I want to speak for a minute on the power of prayer. When we received Madison's diagnosis when she was a year old, there have been several specific things that I have prayed for every day since then--decisions that I didn't want to have to make and how Madison would pass away. I prayed for him to take the decision away from us about whether or not we would have to trach Madison. I prayed that we would not have to watch her struggle and for her passing to be peaceful. I also prayed that when that time would come, that it not be when I was alone with Madison; that Shane would be able to be there with us. The Lord answered every single one of these prayers that I (and so many of you) had prayed.
You may remember back in April, Madison got really sick and was hospitalized for two and a half weeks. From the very beginning, this cold/virus was different than any other sickness before. We even thought we were going to lose her then. On April 19th, I pleaded with the Lord to give me six more months with her. That is exactly what he gave us.
After we got home from that hospital visit, Madison remained healthy for two months, but in August things started to change. For the last fourteen weeks, everything that had worked in the past was no longer working. We thought it was a cold that she could not shake, but looking back now we realize that it was the progression of her disease. She was just not getting better and we could all tell she was growing very tired. She was requiring oxygen 24/7 and was up to 5 liters just to maintain her o2 levels.
Saturday night, October 19, she was very restless. She tossed and turned all night and could not seem to get comfortable. Around 7:15 that Sunday morning, Madison's pulse ox machine alarm sounded and I could tell she could not breathe. Her o2 level was 74 and her heart rate was 204. I quickly picked her up and switched her tubing from her oxygen machine to the tank that can go up to a higher flow. Once she got on the tank with 8 liters flowing, she was slowly able to catch her breath. We decided to take her to our pediatrician, who was on call. Another miracle that took place this week. After meeting with her and contacting our pulmonary doctor in Birmingham, we all made the decision it was time to take her up there. We rode by ambulance and arrived in Birmingham at about 9:15 Sunday night.
While we were in the ER waiting to get transferred to a room, Madison had another episode just like she did with me on Sunday morning. At this point, Madison was on 10 liters of oxygen and they had to bag her to get her airways to open up. After this episode, our pulmonary doctor came in and met with us and we knew then that decisions had to be made and we had to put a plan in place. I called Shane and he and our good friends, Tammy and Terry Kirkland, made the trip with him to Birmingham.
We knew that Madison's disease had progressed a lot the last six months. Her airways were already very narrow but had gotten worse. Any little stress for Madison would cause her airways to clamp down. At this point, our plan was to make her comfortable.
Monday morning Madison was begging to get in her walker. With us being in PICU, Madison had a lot of monitors hooked up to her so she really wasn't able to walk around but was able to stand up. She was starting to get really irritated and getting worked up because she was not able to go like she wanted. Shortly after we pulled her out of her walker, her airways clamped down again. We were all in the room with her (Shane, my mom, Tammy, Terry and I) and immediately there were about 10 other people desperately working to get her breathing again. Within an hour, Madison had been bagged three times. The third time, every time they tried to remove the bag, she would instantly get into distress again. The doctors then advised us that this was the time we needed to make her comfortable. We started her on morphine nebulizer treatments. She received 4 nebulizer treatments with 10cc of morphine in each one. The doctors had told us what to expect and said that Madison would go into a deep sleep and pass away while sleeping. During the third treatment we could see her getting very sleepy and starting to drift into this sleep the doctors spoke of. Shane and I were both in the bed with her, whispering in her ear that it was okay to go. We told her how much we loved her and how proud we were of how hard she has fought. It was when we started the fourth treatment that one of my closest friends, Allison MacLean, walked in. As soon as she saw us telling Madison our goodbyes, she instantly ran to the bedside and started relaying a message to Madison from my sister, Amy.
As soon as Madison saw Allie, another miracle took place. It was almost as if the morphine was replaced with laughing gas. Madison became so hyper! She immediately wanted to get up, get her in walker, drink a baba (bottle), eat some Mickey Mouse (yogurt), and watch "eacha" (preacher).
We were all amazed at what we had just witnessed. As the day went on, the happier she got. She was constantly doing roll call to make sure we were all still there with her. I think we heard, "Abel, Dane, Mimi, Ta, Terwey, Allie!" at least 100 times that day. We had the best afternoon with her and it was like our Madison from a year ago. There was no struggle or shortness of breath in every word she said.
Since she hadn't really napped or slept good in almost two days, that afternoon, she was ready to take a nap. We got the room quiet, and she and I both took about a two hour nap in the hospital bed together. When we laid down, I was truly starting to think that we had just made yet another turnaround. But when she woke up, everything had changed. Her breathing was very labored and she just didn't look comfortable. Shane and I both knew that there was nothing else in our control that we could do.
Her two pulmonary doctors were paged and came right to us. We talked and the decision was made to start making her comfortable. At this point, she was getting morphine through the nebulizer every 30 minutes. We decided to also give her Ativan, which would help with her anxiety.
We were all gathered around her bed and the treatments started. The Ativan made her extremely comfortable and we were all at peace. Madison was still talking to us some and asked Shane and I for a lot of "ugs" (Madison's word for hug). As she was growing more and more tired, we were all telling her how much we love her and that it was okay to go. She would open her eyes and look at Shane and I both and say "I wuv you."
A few minutes later, Madison opened her eyes and pulled the nebulizer mask off her face and looked at me and said "Abel, I see Jesus!" She said this with such excitement and I looked at everyone and asked them if I just heard what I thought I heard. A couple minutes later she said the same thing again. She ended up telling us this four times. After the fourth time, she looked at Shane and me and told us both individually, "I see you later!" This was the last thing she said.
The amazing thing about it is, Madison never once spoke the words "I see you later." I truly believe that what we witnessed was her healing already starting to take place.
Within 45 minutes, Madison took her last breath.
It was important to me the I give Madison her last bath before they came and got her body. I felt like this was the last motherly thing I could do for her. It was such a special time and something I will forever treasure. Her body looked like it was finally at rest. Shane held her while I dried her hair and of course, we put a pink bow in it.
Since Madison passed away during the night, they let Shane and I carry her to the morgue. We actually didn't go into the morgue but the attendants met us at the door. This was literally the hardest part of it all. This was the last time we would hold this earthly body we had loved and cared for for so long.
We were fortunate enough to get some pretty funny and sweet videos of Madison just hours before she passed away. Madison was worshipping Jesus up until the very end.
As I look back, I still can't believe she is really gone. It was fast but it wasn't, if that even makes sense. We had nearly five years to prepare for this day. It still doesn't make it any easier, but with what we experienced, we are overwhelmed with peace in knowing that she is now fully restored and that we will see her later! I am honored that God chose Shane and I to be the parents of His precious child. There is not one thing I would change.